Planning life around pain: the silent suffering of Maldivian women battling endometriosis

“Endometriosis affected me in every way – emotionally, mentally, physically, and financially. Some days, I had to plan my entire day around the pain just to survive,” she said. “I would lie in unbearable pain unable to do anything and I would pass out in pain and exhaustion.”

Aishath Saleema* of Endo Advocates knows these stories all too well. She has lived through dismissals of endometriosis symptoms as period pain.

"You get comments like 'it's in your head'," she said. "It took 15 years for me to get diagnosed."

Saleema is one of over 100 women in an online support group formed around their shared struggle: accessing proper diagnosis and seeking life-changing surgeries overseas at prohibitive costs.

One in 10 women globally are estimated to suffer from endometriosis, a painful inflammatory condition caused by tissue cells growing outside the uterus. The condition makes it harder to get pregnant. Despite its prevalence, diagnosis often takes years. In the Maldives, patients say it takes much longer than the global average delay of 6.6 years.

A lack of awareness among healthcare workers, societal taboos, and the dismissal of period pain as "normal" create barriers for women to access care. 

The cultural silence around menstruation spans generations. "We were never taught what was normal – heavy bleeding, debilitating pain, we just accepted it," Nasha, who was finally diagnosed after 10 years, recalled.

“So every month, I endured mind-numbing pain, with a smile on my face, because that’s what society tells us: it’s just period pain, every woman gets it.”

Even when her post-pregnancy daily abdominal pain became unbearable – "like a knife constantly stabbing me" – doctors were unable to diagnose her condition until an ultrasound revealed a simple cyst. As her pain worsened, a radiologist recommended surgery abroad.

The surgery revealed her bowels, uterus, ovaries, and ureter were fused together with adhesions and deep-infiltrating endometriosis. It was the first time she heard the name.   

"But no one ever explained to me what it actually was. The word 'endometriosis' was just written in my surgery card," she said.

Back home, Nasha struggled to find treatment options and proper information about the disease. She would continue to suffer for another decade.   

Aside from severe pain in the pelvis, especially during menstrual periods, other symptoms of endometriosis include heavy bleeding during periods, bloating, nausea, fatigue, depression or anxiety, and pain during sex or when urinating or defecating. In some cases, endometrial-like tissue could form elsewhere in the body.

Misconceptions about endometriosis as just a "painful period" run deep, said Saleema. But the illness can affect multiple organs and linger even after the uterus is removed.

"There are patients who've had their uterus taken out and are still in pain –  then they're told they can't have endometriosis anymore," she said.

"The problem is with routine examinations, too,” said Nasha. “General gynaecologists can’t treat this condition and often don’t know how to check which areas endo has spread. Untrained radiologists also report scans and imaging as normal."

In December 2023, patients rejoiced when the new administration expanded healthcare for endometriosis and infertility. The policy changes sought to address denial of insurance coverage "due to the diagnostic links of these conditions, including instances where infertility has been diagnosed," according to the President's Office.

Despite the significant progress, patients continue to encounter financial and systemic obstacles to diagnosis and treatment, even after a dedicated clinic was opened at the state-run Indira Gandhi Memorial Hospital in Malé.

The Endo Advocates support group recently shared their concerns with parliament about the "silent suffering" of women enduring chronic pain. 

"Endometriosis is one of the health conditions facing women that are neglected in a country that considers reproductive health a taboo topic," reads a letter sent to MP Mohamed Ibrahim. 

Only Dr Ibrahim Rasheed at the Care Trust Clinic in Hulhumalé is able to diagnose the condition through imaging, the group said. 

While he is ostensibly the only radiologist in the country capable of detecting the disease from scans, doctors say endometriosis can also be diagnosed based on a patient's medical history and confirmed through laparoscopy. 

Endo Advocates went on to criticise the lack of insurance coverage for advanced care. Painkillers are available through the Aasandha insurance scheme, but medications like Dienogest must be imported at personal cost. Advanced surgeries often require travel abroad, but the National Social Protection Agency's assistance falls short of covering all the expenses.

There is no official data on diagnosed patients, and no local institution is able to provide figures or research on the condition, the group stressed. 

Earlier this month, parliament's social affairs committee took up their concerns with healthcare officials, who defended the current system.

Dr Aminath Zeyba Ahmed, medical director of the Malé City Group of Hospitals, told the committee that IGMH does not employ endometriosis specialists because the field is not formally recognised as a specialty.

"There is no such specialty training, in the way we traditionally get an MQA [Maldives Qualifications Authority] approved medical training to specialise," she said.

"The letter also mentioned that the Aasandha hospitals abroad don't have specialists, that is because there are no specialists in this field. But among doctors, there are some who have an interest in this area and gain experience in this. There are private clinics like this in India as well. The information I received suggests that it is also very commercially driven. So these clinics are run by doctors who have a special interest in consulting these patients and gain experience from patients over time. They are not specialists with a certain certification."

The dedicated IGMH clinic that opened in August last year still largely depends on laparoscopy, Dr Zeyba conceded. The invasive procedure requires expertise for correct interpretation, often leading to inaccurate diagnosis. 

She acknowledged private practitioner Dr Rasheed as one of the few doctors with the training to identify the disease through scans. IGMH doctors could undergo similar short courses if they wished to specialise, she noted. "Even if we tried to bring in an endometriosis specialist, it would be difficult – because it's not a formally recognised field," she added.

Arrangements for sending patients overseas were first made last year. Since January this year, the National Social Protection Agency has spent MVR 1 million (US$ 64,850) to support 14 endometriosis patients seeking surgery abroad, officials told the committee.

NSPA's managing director told MPs that the agency was trying to identify a hospital with a comprehensive multi-specialty setup. “We understand the importance of this issue and hope to finalise such arrangements soon,” said Aminath Zeeniya.

The committee testimony sparked a backlash from patients who felt it minimised their lived experiences.

In a press release, Endo Advocates criticised the remarks as "irresponsible" and dismissive of global research, medical expertise, and the daily realities of patients.

"So many people suffer in pain because we are expected to function normally," Nasha noted. "For fear of losing our jobs as well. We have to go to ER and then go right back to work." 

As endometriosis can affect multiple organs and nerves, excision surgery – the removal of lesions by skilled multidisciplinary teams – remains the most effective treatment. However, outdated methods like ablation, diagnostic laparoscopy, or uterus removal are still being recommended locally, the Endo Advocates' statement said.

The group challenged the suggestion that private excision centres abroad are "commercially driven."

"If a patient receives the appropriate treatment, it ends the cycle of doctor-hopping, flare-ups, ER visits, and being told it's 'just period pain'," they said, calling on the government to ensure proper referrals, treatment, and care pathways – including overseas support when required.

Excision surgery is the only treatment that significantly improves the lives of patients, Saleema explained. "My surgery took five hours. But since then, I've been able to live a normal life," she said.

However, access remains limited. "Aasandha only covers hospitals in [India], but excision specialists aren't there. The closest options are in Mumbai and Egypt, and none of them are covered," she said.

While NSPA provides between US$ 4,500 to US$ 5,100 – the average assistance for patients who opt for hospitals outside the Aasandha-approved network – Saleema noted that even the most basic surgeries start at US$ 6,000 whilst more complex ones can cost up to US$ 12,000.

"That's just the surgery. NSPA provides the money in Rufiyaa and we're forced to buy dollars from the black market, where we lose about a thousand dollars in conversion," she said.

"There are more than 100 members in our Viber community, and we believe that's just a fraction of the women suffering in silence," Saleema said, noting how excision surgeries in Mumbai and Egypt have "changed the lives" of 15 members.

But endometriosis requires lifelong management, something Nasha learned the hard way. Years after her initial diagnosis and surgery, the symptoms returned with a series of flare-ups. Following a second excision surgery last year, she finally experienced pain-free periods for the first time in her life.

"The quality of life is completely different now – a difference of night and day," she said.

But accessing such transformative care requires leaving the country. While doctors in the Maldives may lack current knowledge or specialist skills, doctors abroad offer far better care, said Saleema.

She feared the government may stop NSPA funding for overseas surgeries and instead push patients to use local clinics in Malé and Kulhudhuffushi.

"That's concerning – because the right care isn't available here yet."